Findings from Community Workshops Designed to Help Expand Arizona's Dementia Capable System

Abstract Among the 5.8 million people living with Alzheimer’s disease (AD), there are three vulnerable groups where community partners can join efforts to serve the community more comprehensively. These include (a) people living alone with Alzheimer’s disease and other related dementias (ADRD) who may or may not have a family caregiver, (b) people with Down Syndrome or another intellectual or developmental disability aging with ADRD and their family caregivers, and (c) people with ADRD and their family caregivers in the Latino community. Dementia capable systems are designed to address the needs and concerns of all individuals, families, and communities impacted by ADRD. The project develops and expands ADRD programs and services across Arizona through educational workshops, case management services, and evidence-based programs. Workshops (N=67) were provided to a variety of professionals and community members ranging from promotores/CHW’s (community health workers) and case managers to family caregivers and people living with dementia (N=2,272). Workshops successfully attracted a substantial proportion of Hispanic or Latino/a participants (63%) and women (84.5%). Perception of benefit ratings were overwhelmingly positive with over 90% of participants agreeing or strongly agreeing that: the workshops met expectations; they were willing to attend other programs by us; and they learned something they could use. Moreover, based on their workshop experience, they felt more confident that they could help these three underserved populations. Overall, workshops were clearly acceptable to participants and feasible to deliver. In addition, they contributed to an increased awareness in ADRD related to the project’s three target groups.


EXPLORING PARADOXICAL LUCIDITY STORIES: WORKING TOWARDS PROMOTING MEANINGFUL ENGAGEMENT WHEN LEAST EXPECTED Regula Robnett, and Thomas Meuser, University of New England, Portland, Maine, United States
Lucidity is the typical cognitive state of adults. However, conditions such as Alzheimer Disease and major neurocognitive disorders can rob people of their usual clarity. Episodes of "paradoxical lucidity" (PL) happen when there is a spontaneous return of lucidity in people who are assumed to have lost the capacity to engage and communicate. These often take place near the end of life. Anecdotal stories depicting PL have been shared for centuries, but the etiology and mechanisms of PL rarely have been examined scientifically. The purpose of this mixed-methods project was to "gather the stories," of witnessed episodes of PL, to describe them, including potential triggers and contextual supports. Sixty witnesses of episodes have shared their experiences. Two-thirds those displaying PL were female. Most had died within six months of the episode. Episodes generally lasted under an hour (range: "moments" up to 5+ hours). Illustrative descriptions about PL emerged: 1) A trusted person or professional, perhaps unknowingly, saying or doing the right thing could trigger an episode; 2) PL frequently took place in a sacred environment involving ritual spiritual practices (e.g., saying the rosary and singing hymns); 3) meaningful music was often a trigger; and 4) PL sometimes involved the return of one's professional or familial/friend role. Familiar sounds (e.g., music, voices) were the most common sensory antecedents. A deeper understanding of PL events could potentially drive interventions to promote these valued episodes. The possibility that end-stage neurocognitive impairments could be reversible, even for a short period, is thoughtprovoking and inspiring. A vast amount of research has focused on the development of dementia caregiving evidence-based programs (EBPs) in order to mitigate the well-known negative impacts of providing care for persons living with dementia (PLWD). In order to support efficacious results, many programs utilize a variety of both objective and subjective outcomes as typically reported by the caregiver or collected via medical history and clinical assessments. However, more recent research has attempted to understand the subjective illness experience of PLWD through self-report measures. Using data obtained from an online database (i.e., Best Practice Caregiving), that currently provides in-depth information on 44 dementia caregiving EBPs, the current study aimed to examine the number of EBPs that incorporated PLWD self-report measures on a variety of well-being outcomes. Results indicate that out of the 44 EBPs included for analysis: 1) Four out of 19 programs evaluating PLWD symptom severity/difficulty/distress used a PLWD selfreport measure; 2) Eight out of 10 programs evaluating PLWD symptoms of depression used a PLWD self-report measure; 3) Five out of 10 programs evaluating PLWD quality of life/ care utilized a PLWD self-report measure; and 4) One out of 9 programs evaluating ADL/IADL dependencies utilized a PLWD self-report measure. Discussion will focus on potential gaps and limitations of primarily using caregiver proxy reports to collect personal well-being outcomes for PLWD and ways in which researchers can integrate more self-report measures into intervention and programmatic evaluations.

EXPLORING WELL-BEING OUTCOMES AMONG PERSONS LIVING WITH DEMENTIA: SELF-REPORTS VERSUS CAREGIVER PROXY REPORTS
Among the 5.8 million people living with Alzheimer's disease (AD), there are three vulnerable groups where community partners can join efforts to serve the community more comprehensively. These include (a) people living alone with Alzheimer's disease and other related dementias (ADRD) who may or may not have a family caregiver, (b) people with Down Syndrome or another intellectual or developmental disability aging with ADRD and their family caregivers, and (c) people with ADRD and their family caregivers in the Latino community. Dementia capable systems are designed to address the needs and concerns of all individuals, families, and communities impacted by ADRD. The project develops and expands ADRD programs and services across Arizona through educational workshops, case management services, and evidence-based programs. Workshops (N=67) were provided to a variety of professionals and community members ranging from promotores/CHW's (community health workers) and case managers to family caregivers and people living with dementia (N=2,272). Workshops successfully attracted a substantial proportion of Hispanic or Latino/a participants (63%) and women (84.5%). Perception of benefit ratings were overwhelmingly positive with over 90% of participants agreeing or strongly agreeing that: the workshops met expectations; they were willing to attend other programs by us; and they learned something they could use. Moreover, based on their workshop experience, they felt more confident that they could help these three underserved populations. Overall, workshops were clearly acceptable to participants and feasible to deliver. In addition, they contributed to an increased awareness in ADRD related to the project's three target groups.

FIRST: ENHANCING AGENCY DEMENTIA CAPABILITY THROUGH DEMENTIA-SPECIFIC INTERVENTIONS AND SUPPORTIVE SERVICES Elizabeth Wellbrock, and Joanna Hutchinson, County of San Diego Health and Human Services Agency, San Diego, California, United States
Through the First Identify and Refer then Serve and Track (FIRST) Project, individuals and caregivers have critical connections to community organizations and resources to learn ways to handle living with memory problems. The FIRST project integrated new practices into existing programs to address gaps in service and piloted a new dementiaspecific case management program. The initial intervention is a system-level change within the County of San Diego's Aging & Independence Services (AIS) department to identify, pilot, and implement a brief Alzheimer's Disease and Related Dementias (ADRD) screening tool. The tool was used by non-clinical personnel to identify potential ADRD cases. Individuals who screened positive for possible ADRD were referred to their physicians for an accurate diagnosis. The second intervention consisted of two components: a behavioral symptom management intervention for social workers to use in the home with caregivers and a dementiaspecific case management program (including respite care) to improve quality of life and future planning for those with ADRD living alone or with a family caregiver. As of January 2021, 536 clients across several AIS programs have been screened for ADRD, of which, 60% screened positive. FIRST case management has served 196 clients, 70 who lived alone and 126 who lived with their caregiver. Respite was provided to 98 clients totaling to 3,666 hours. This poster evaluates the effectiveness of the program components in increasing dementia capability of an agency, and where applicable, its effect on caregiver burden and self-efficacy.

INTEGRATING ALZHEIMER'S MESSAGES INTO CHRONIC DISEASE PROGRAMS
Leslie Best, 1 Rebecca Drewette Card, 2 Lisa Garbarino, 3 Christopher Taylor, 4 Kimberly Boim, 5 and Benjamin Olivari, 4 , 1. National Association of Chronic Disease Directors,Decatur,Georgia,United States,2. Public Health Partners,Topsham,Maine,United States,3. Centers for Disease Control and Prevention (CDC), Atanta,Georgia,United States,4. Centers for Disease Control and Prevention (CDC),Atlanta,Georgia,United States,5. CDC,Atlanta,Georgia,United States The number of people in the United States with dementia is increasing, with nearly six million people living with Alzheimer's disease and related dementias. It is the fifth leading cause of death for those aged ≥65 years. Over 95% of people with dementia have another comorbid chronic condition. The Healthy Brain Initiative's State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map notes that public health agencies should raise awareness of the link between brain health and physical health, and specifically calls out tobacco prevention and control, cardiovascular health management diabetes prevention and management, obesity prevention and control, and injury prevention as intervention points. The National Association of Chronic Disease Directors developed brain health messages targeted to reduce risk for cognitive decline through the prevention and control of comorbid chronic conditions. These messages can be leveraged for public health action by integrating them into existing chronic disease programs.

PSYCHOLOGICAL CHALLENGES AMONG OLDER ADULTS WITH EARLY STAGE DEMENTIA: A NARRATIVE LITERATURE REVIEW Mijin Jeong, University of Kansas, LAWRENCE, Kansas, United States
Due to rapid expected growth in the population of older adults with dementia, exploring the issues and experiences related to early stage dementia (ESD) is a fundamental step toward helping individuals adjust to their diagnosis and transition into treatment. The purpose of this paper is to review the extant literature regarding how older adults adjust to and cope with the onset of dementia through major situations and difficulties. A narrative approach was applied to review 120 articles focused on ESD that were published in the U.S. and other western countries between 1995 to 2020. There were four apparent themes in the literature, which align with key chronological experiences related to ESD: diagnosis of dementia; stigma related to dementia; the development of identity with ESD; and social and servicerelated experiences of older adults with ESD. Stigma related to dementia was a powerful risk factor that hindered psychological adjustment to ESD. Varied cultural perspectives